punched again

God, God, save me! I'm in over my head, Quicksand under me, swamp water over me; I'm going down for the third time. I'm hoarse from calling for help, bleary-eyed from searching the sky for God.... And me? I pray. God, it's time for a break! God, answer in love! Answer with your sure salvation! Rescue me from the swamp, Don't let me go under for good, pull me out of the clutch of the enemy; this whirlpool is sucking me down.... Now answer me, God, because you love me; let me see your great mercy full face.
Psalm 69 (The Message)

I feel like a punching bag sometimes. I know God is not punching me down or taking joy in my discouragement but on days like today, and in my postpartum hormones/ sleep deprived/ living far from home state of mind, I feel discouraged and like every time I start to get back up, to find humor in life, to relax, I get knocked down... again.

It's minor things really. And of course, the guilt that I shouldn't feel sad about minor things since Ellie is living then creeps in and I feel even more discouraged that I was feeling down in the first place.

We took Ellie to her pedi today for her two week checkup. She lost weight and was back down to her discharge weight of 6lbs, 9 oz. I began to sob. I have so enjoyed breastfeeding Ellie. It's so completely different from my experience with Will - so relaxing and peaceful and, quite honestly, almost like a drug in how it just lulls me to sleep. It's been so convenient that I can just feed her - wherever I am (even in public!) without having to also transport my syringe and sns contraptions that were required to feed Will along with a pump and bottle, etc. Feeding Will took an hour and a half - I have been so thankful to feed Ellie in thirty minutes and in a relaxed state! I have been pumping after my daytime feeds - mostly because I don't know any different since I was used to doing that for Will. I like to have extra milk on hand too - just in case. When Ellie was in the belly and doctors didn't know if she could survive, I had decided to pump for awhile after her birth and, if she didn't live, to donate my milk to a program that sends milk to Africa. Maybe this sounds bizarre but it felt like something proactive I could do to take care of another baby if I couldn't care for my Ellie. I hope to now accumulate enough milk to be able to still donate some - in Ellie's honor.
Anyway, when we realized today that she had lost weight, I was so discouraged. I felt knocked down. Again. I thought our feedings were going so well. I feel like such a failure. I wondered if the lack of growth was somehow related to her various health issues. The doctor had me feed her in his office and we weighed her again and she was up three ounces - to 6 lbs, 12 oz. (Thank goodness no one puts me on a scale after a meal - can you imagine???) She poops more than any kid I've ever met - probably 10-12 times a day - so we know she is getting milk. Between her poops and her weight gain in his office today after a feeding, we know that I am producing plenty of volume but perhaps I make skim milk this time. (Will's was more like half & half!) So, the doctor has me on a high fat diet of cashews & avocados to boost my calories in the milk and also on an herb that increases milk flow - fenugreek. Supposedly, I will start to smell like molasses soon thanks to the fenugreek. If you smell me coming, you'll know why I'll make you crave French toast.
I am so thankful that the pedi is supportive of my desire to breastfeed Ellie and is going with a natural approach to boost her calories first. We all agreed that Ellie likely burns more calories than most newborns simply due to the fact that she goes to doctors or therapies four times a week - & cries a lot during those sessions as she is taped & splinted & casted. Plus, every day at home, we are taking off her splints for exercises and she always screams for the removal and putting back on of the splints. I am certain that she is burning extra calories during these times. I go Friday again for another weight check and am hopeful.
It just felt so discouraging not to have a victory in her weight gain. I feel like the relaxing time that was our feedings now has a layer of stress for me. I worry about her not thriving.

Then, we did the PKU test - which I hate! I remember how horrible it was with Will - not having feet made it difficult to get enough blood. Ellie has the feet but the tape on her feet and legs made it difficult to get the enough blood. We ended up removing the tape (torture for her) and she had to get pricked twice (torture on us both.)

I lost count how many times I have told Ellie "I'm sorry" today with tears streaming down my face.

And the doctor checked her joints - causing her to howl in pain. I continued to sob.

And R left again today.

And I got more of Ellie's various specialists appointments made. My calendar is completely devoted to kids' doctors' appointments. Over the next month I have in my calendar: 3 times a week for Ellie for casting/splinting/therapy appointments, Ellie lowers appointment, (waiting on referral for her uppers appointment), Ellie geneticist, Ellie pedi, Ellie eye appointment, Ellie weight checks, & Will hand appointment. It's like I have become a medical coordinator. My history & Spanish degrees are not turning out so useful right now. My calendar overwhelms me.

And Will is acting out. He adores Ellie but is having some problems with me. When I got home from my post op checkup yesterday, he jumped up & down in excitement squealing that now I can hold him again. And I cried as I told him I can't hold him or pick him up for 4 more weeks. It is torture on me and I can imagine it doesn't make much sense to him that I hold Ellie but not him. He keeps asking if I still love him. He has tried some manipulative tactics too this week. The pedi today told me it was really important for me to spend some one on one time with Will. It's not enough for that time to come from daddy or grandparents. Of course, our pedi knows our situation and how difficult it is to find sufficient time and energy for me to give Will. It feels like a catch 22. If I give Ellie what she needs, I neglect Will. If I give him what he needs, I neglect her. I'm trying so hard but since I can't lift him, I can't really be alone with him to take him on a Mommy date. And my mornings feel consumed by Ellie's various appointments. I try to play with him on the floor but I admit to failing even at that - my mental energy is so low right now and half the time, by the time I get to the floor to play with him, it's time to feed Ells again. We do plan on doing some exploring at the hospital tomorrow while my Mom takes care of Ellie in therapy. Hopefully this will be some good one on one time and there will be plenty of people around if Will falls to pick him up since I can't.

I feel like I am failing my kiddos - not enough calories in my milk, torturing my baby girl every time I dress her or take her splints on and off, unable to hold my little boy or give him adequate energy and creativity and even consistency in routine.

I thought yesterday that I was doing really good with handling our "new normal." But, today, I don't know - I feel so discouraged and don't know how I will manage being 100% mommy to both of these precious kiddos.

But, I will try to find joy in doctor's orders to up my calorie intake & eat more "fats!" :) Pretty sure I'll never get that medical advice again!

11 thoughts:

jen said...

I am drawn to your blog every day now. The way you are able to write your emotions amazes me. As I read the words I completely feel your heart. I have three kids and the one in the middle has severe needs. I struggle with the mommy guilt constantly. There is no way to feel as if you give enough of yourself to all kids. The life you have now may or may not be what the future holds and Will will settle into the routine even if it is lots of appointments for his sister. Please know that what you are writing is powerful and very real for some people. You are not alone. Just as I'm sure life with Will was so scary for a while after his birth you have come to handle the ups and downs of him, just as you will with two. You were chosen to have a life closer to God and with deeper meaning than most of us will ever know. It brings me comfort to know I was chosen to have a life I will never take for granted. We are a unique a rare breed:)

ChrisP said...

Eat Cashews! Drink whole milk(blech). Milkshakes!! Maybe just maybe add a supplement bottle of formula and a calorie booster(They gave Evan one, he burned too much eating and trying to breath) 1x a day-- Take that time to, if anyone around, let them feed Elli and take Will and sit and watch a cartoon or color a picture.
Sounds WAY easier than it sounds, I know.
You have now become a mom of 2, this is as hard as or harder than 1. For US. Because we concern so over the things we think we can control, we want the kidS to feel secure in knowing we love them both, and can't explain why. We want them to always love each other unconditionally as we do them. Truth is, they do, probably better than we, we, keep dancing around trying to make what we think is wrong right.
They, when they act out towards us or a sibling, turn around in 30 minutes and love us as if nothing ever happened.
You are doing great!! You have soooo much interference and doing w/o R is tough! Cry Cry Cry, laugh and frustrate, it is okay! God is in control, it is okay to loose a bit of yours!! Love you Katie, praying and loving you --Christy

leeannloggins said...

Remember... I can do all things through Christ who strengthens me.
Katie, I am a faithful reader of your blog & it inspires me everyday. You are an amazing Mom & Will & Ellie are so lucky to have you. I am crying,laughing,& praying with & for you daily. I cannot imagine how overwhelmed you must be on a daily basis but then God steps in and precious creative Will does or says something hilarious or you get stuck in the shower & it lightens your moments with laughter. Just know that here in Tyler the prayers are abundant & will not stop as they are all over the country. No guilt Katie... You are feeling exactly what you should feel with all you are going through. God will hold you up & even carry you in his arms if he has too. Love to you all.. Lee Ann Shaver Loggins

Julia Shelton said...

I love to read your blog daily Katie. I wish I was there to help you and your sweet mom with your precious children. Rusty and I send our love from Georgia and pray for you ALL many times daily.
Enjoy eating cashews and avocadoes-Yum, Yum!

Mike and Christie said...

May the Lord grant you strength and peace as His Spirit washes over you, refreshing you with a new day.
His mercies are new every morning.

Great A. Carolea said...

Katie, so sorry that you are feeling so low right now. I continue to pray for your strength. Please remember that no mother can be all things to all of her children. Will is three, remember. And to my recollection three yrs. of age was worse than two. Your such a loving, giving mother. Try not to be so hard on yourself. Love you!!

BrendaE said...

Oh precious young sister in Christ, do not beat yourself up. Hormones have a way of making a girl feel REALLY down on herself after the birth of a healthy baby so I'm going to pray that Satan will be bound from discouraging you through those ugly post partum hormones as you daily deal with the struggles of two children with special needs. Every time I read your blog, I am amazed and humbled about what you face every day, particulary right now, and the way you handle it with such grace. And feeling free to vent your frustration and disappointment can be healing and you are still doing it with grace. May He grant you the peace that surpasses all understanding this day and may your precious Will feel especially loved today.
With the love of Christ from an Oklahoma Gram, Brenda

tpd1308 said...

just wanted to say that I have been following your blog for a while.. finally got the chance to sign in and comment.. I just wanted to let you know that as one AMC mommy to another that it gets better as they get older.. the appointements become less frequent :).. also both of your babies are beautiful :)..

tpd1308 said...

also didn't realize it would sign in with my hubbies username

Winky said...

I know you through your father and I've been following your blog. I can't tell you how blessed I am by your spirit and your grace. The honesty and vulnerability you share is powerful. THANK YOU for opening your heart and soul and sharing your inner most feelings. Thank you for your complete honesty (the ups and the downs). You are certainly not a failure. Because your willing to be vulnerable, many people realize they are not alone. God hears your crys and He sees the pain. He will see you through...He will carry you through...He says, For I know the plans I have for you, they are for good and not for evil, to give you a future and a hope.
In Him, Wendy

The Smiths said...

Katie, you are doing an amazing job at all that you are juggling! I can only imagine how hard it is to hear Ellie in pain at appts and while you are doing therapy at home. God will take care of her and protect her joints. He is carrying you, Reagan, and Will too. I'm glad you ending up having a good date with him at Scottish Rite. He'll continue to adjust to your family's new normal. Keeping pressing on and know that God does hear all of your prayers. He cries with you and carries your pain. You are doing an awesome and are an amazing mother! I'm praying for your healing and all that your family is enduring. Love, Christin

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